I have confronted and overcome so many parenting fears since I learned that Caroline would be entering the world 6 weeks early. But the thought that Caroline will remain nonverbal for the entirety of her life is overwhelming. With each passing day, my fears multiple that I will never have a conversation with my daughter. This fear is creating an almost a crippling anxiety. I find myself breaking out in cold sweats every time the thought, “what if she never speaks” creeps into my mind.
Up until recently, it was commonly thought that if a child with autism did not acquire language by the age of 4 or 5 it was highly unlikely that she would ever acquire language. However, in March of 2013 an article appeared in the journal Pediatrics offering hope to parents of children with autism who are nonverbal.
Scientists at the Center for Autism and Related Disorders, examined data on 535 children, ages 8 to 17, diagnosed with autism and with severe language delays at age 4. At age 4, their language delays ranged from not speaking at all to using single words or phrases without verbs. The researchers found that, in fact, most of these children eventually acquired language skills. Nearly half (47 percent) became fluent speakers. Over two-thirds (70 percent) could speak in simple phrases.
Language acquisition for nonverbal children requires intensive therapy. We are doing everything we can to provide Caroline with the therapy she needs—I have started playing hard ball- hiding her iPad and making her ask for it verbally. I then take it away after a minute and will not give it back until she makes sounds. Sometimes she complies, other times she gets frustrated and pinches or head butts me.
I can only imagine how frustrating it must be for Caroline to be locked in her own mind and not be able to fully communicate her needs and wants. Caroline uses sign language and gestures pretty effectively; she has also started working with a communication App during speech therapy that shows promise. Each of these developments is a huge step forward. I do not to diminish each of these accomplishments for what they are in their own right but I look at each of these as a major step toward developing verbal speaking skills.
There is hope. I have nothing but the greatest confidence in Caroline but I also need to manage my expectations. And I feel selfish because I think about Caroline’s language acquisition in terms of my ability to have a conversation with my daughter. Yes, I want her to speak so she can communicate with the world. But if I am honest with myself, deep down (or not so deep down) I just want to be able to hear my daughter’s voice, to have a conversation with her that includes spontaneous language—I want to be able to communicate with Caroline in a meaningful way. I realize there are meaningful ways to communicate that do not involve verbal communication but that thought is not terribly comforting on sleepless nights.
What if she never speaks? In time–if, I had to–I know–I would learn to accept this as our reality but that time is not here.
(I know, I know the phone needs to be flipped)